Wednesday, 28 May 2014

Guest Blogger, Beth Popa Castelvetere - I'm Pissed!

There is a very active ALS support community on Facebook, with many groups and a lot of information shared back and forth. It was in one of these groups that I first encountered a woman I now happily call an online ALS friend, Beth Popa Castelvetere. Beth is a young mother, not even 40 years old, with a young son and a husband, both of whom she adores. She is struggling with ALS.

Beth posted the following as her Facebook status the other day. I found it so powerful that I asked her if I could post it with her as the guest blogger for today. She kindly said yes. Here is what Beth has to say about her battle with ALS.

This will not be a typical post from me, just a warning. If you have specific views and are easily offended maybe you shouldn't read, if you read and get offended my apologies in advance, I hope it doesn't deter you from reading my future posts. Tonight, "I'm pissed." 

A year ago I was still working, driving, walking with a cane, now I'm in a wheelchair and can only bear weight to transfer. I'm pissed. We all die, yes. But I and the others with ALS are guaranteed a death so gruesome, each muscle will die we become paralyzed, unable to speak, swallow and breathe on our own, while our minds stay perfectly in tact. I'm pissed. Trapped with no place to go. I'm pissed. 

My son has to witness his mother's body deteriorate something so ugly and horrific, please don't say it will make him a better man. I'm pissed. It's May and ALS awareness month but I don't see one damn public service announcement on TV yet I see several times a day animal cruelty/shelters. Guess what ALS is what's inhumane. I'm pissed. 

ALS is named "Lou Gehrig's Disease" yet what awareness does MLB do CONTINUALLY? I'm pissed. We spend time and money thrashing each other's political, social and religious views when we could spend our energy and money on helping find treatments and cures. I'm pissed. 

My muscles wave through my entire body like leaves waving in the wind every minute reminding me it doesn't get better only worse. I'm pissed. I strived so hard to be healthy, thin, in shape prior to ALS, now I wish I was overweight and how my once "good body" is now the worst I could be. I should be fat. I'm pissed. 

I'm ashamed I didn't know much about this disease prior to, and still people don't know. I'm pissed. My list could go on...maybe another night. Don't feel sorry for me, it is life. And I'm pissed. If you want to help and I inspire you then DO SOMETHING. Inspire others, give to others, help each other, teach your children this way and hey educate others on ALS. Start somewhere just start. I'm pissed and I'm alive. 

Real facts. Real life. Real me.


  1. I am pissed also! My 43 year old son, Jason Whitworth has ALS. He also has two children and a wife that love him. We try to get the word out every day.

  2. Beth, I understand. My dad passed away last June. The best next step for you is to go to an ALS support group. You'll learn so much about how to live with it. Love and prayers for you and yours